Charity or independent living?

Dr Christine Peta Disability Issues —
THIS article examines the charity or religious model of disability, as one of the frameworks that help us to understand the ways in which society responds to disability and to analyse if such responses are appropriate or not.

In part, the Merriam Webster dictionary defines charity as “generosity and helpfulness, especially towards the needy or suffering”.

According to Wood (2012), the charity model of disability is largely linked to religious schools of thought which state that it is good to assist people who are in need. Wood notes that it was in the 1300s that the King of France set up the first charity which was meant to help blind people.

From then on, the idea of establishing charities that help the poor and marginalised people was established, to the extent that laws were promulgated to legalise begging for people who were defined as being in need.

The charity model of disability regards people with disabilities as sufferers who should benefit from charity and compassion and should be grateful for it. The common belief is that people with disabilities are individual “tragedies” that are not capable of taking care of themselves or managing the affairs of their own lives.

Instead of seeking to facilitate the creation of an inclusive society, in which disabled people are empowered to assume independent living, people may prefer to be pitiful, alongside a skewed belief that charity will meet all the economic and social requirements of persons with disabilities.

Nevertheless, disabled people may realize that their choices are limited as they may be denied the platform to make their own decisions about issues that affect them and their lives (Harris & Enfield, 2003). The danger is that a purely charitable approach runs the risk of denying people with disabilities their self-rule and freedom, their human rights may also be seriously violated.

Under the charity model of disability, caregivers may assume a lot of power and although they may mean well, they may end up imposing decisions on people with disabilities, thereby denying them the right to make choices for themselves.

A typical example is that of forcibly sterilising women with disabilities (Harris & Enfield, 2003), alongside a belief that they should not have their own biological children because they are disabled.

Research undertaken in Zimbabwe (Peta, 2015), revealed that when Tsitsi who has polio induced physical impairment had her first baby at the age of nineteen, her mother who was taking care of her attempted to facilitate Tsitsi’s “sterilisation” at a rural clinic in Gokwe.

Tsitsi said, “My mother took me to the clinic in the village. She said to the people can you remove the body parts on her body so that she will not get pregnant again because she is disabled? The people at the hospital refused.”

“In January 2007, mainstream US media headlines broke the story of Ashley, a disabled girl whose parents in 2004 had obtained approval from doctors and the ethics committee at the Seattle Children’s Hospital to pursue medical treatment that would stop her growth and sexual development,” (Hall, 2011).

At that time Ashley was six years old, and the procedure consisted of a hysterectomy which would ensure that, among other things, Ashley would not be able to get pregnant. The treatment would also see the elimination of Ashley’s breast buds so that she would not be able to develop the breasts of an adult female.

Ashley’s father and mother as well as the medical team that undertook the surgery defended their actions, in a scenario in which they appear to be unable to come to terms with the fact that a disabled girl or woman is a human being who is just like any other person.

The parents argued that Ashley’s non-development of features that symbolise adult femininity on her body would among other things be less stressful for her.

Those who supported this treatment claimed it would make life easier for Ashley and it would also be less demanding for her parents to take care of her because she is disabled. Critics argued that the treatment represented a form of gendered oppression (Hall, 2012).

The irony of the matter is that within the charity model, the discretion of the caregiver determines the nature of the charity that should be given.

As noted by the Michigan Disability Rights Coalition, the charity model of disability runs the risk of reducing the self-esteem of people with disabilities as the help offered to them is often accompanied by a set of conditions that are forced on the beneficiary.

In some cases where persons with disability may need high levels of support as determined by the nature of their impairments, care givers may deliberately withdraw such support, particularly if they regard the person with disability as being negative, stubborn or arrogant (Harris & Enfield 2003).

Any attempts that may be made by people with disabilities to challenge patronization or to assert their rights may result in them being labelled as people who are bitter and angry because of their impairments, hence they should not be taken seriously.

In this article, I have focused on the religious model of disability but I recap on my article of 27 November, 2016, entitled “Disability is not an illness” in which I examined the medical and social models of disability so as to link such models to the charity model of disability.

As previously noted, the medical model calls upon disabled people to assume the ‘sick role’, thereby viewing them as perpetual ‘patients’ who should continuously be acted upon by a vast ‘army’ of competent medical doctors, alongside a skewed belief that they cannot take charge of their own lives (Winter, 2003).

The social model of disability brought a fresh understanding of disability to the scene and, one which argues that disability is not inability; thereby focusing on the way in which society organizes itself in ways that exclude disabled people.

The social model argues that it is the responsibility of an entire society to create an environment which does not exclude disabled people from all aspects of life.

Way forward : By presenting a critique of the charity model of disability, I do not mean to say that we should not provide care for persons with disabilities when it is required, or that we should not be compassionate or charitable towards people with disabilities.

lt is more beneficial to seek to empower people with disabilities and to facilitate their full integration in mainstream society as equal citizens who deserve our respect in line with the tenets of the social model of disability.

Such an approach would be more beneficial, compared to keeping people with disabilities at the peripheries of society and regarding them as individuals who only need our charity and the dropping of a few coins for them from time to time. It is evident that the charity model has not done much to improve the lives of persons with disability or to promote their independent living.

It is therefore not surprising that the Michigan Disability Rights Coalition has argued that the charity model is more disabling than enabling, thereby perpetuating the discrimination and marginalization of persons with disability.

Instead of creating an ‘army’ of powerless and dependent individuals, we ought to pursue disability models that promote justice, equality and independent living for people with disabilities.

Dr Christine Peta is a Public Health Care Practitioner who among other qualifications holds a PhD in Disability Studies. Be part of international debate on how best to nurture a society which is more accessible, supportive and inclusive of disabled people. Partner with Disability Centre for Africa (DCFA): WhatsApp; 0773-699-229, Website; www.dcfafrica.com; E-mail; [email protected]